A small, remarkable boy

I sat looking at a monitor filled with the image of a small, remarkable boy and thought about his extraordinary family–and again wondered how they are able to bear it. I am separated from their daily personal associations with the sorrow, grief, heavy anticipation, longing, and hope by miles and miles–but–Christopher and Natalie have connected me (all of us) through the sweet, tender, sometimes difficult observations they’ve posted.

I know what I’ve been praying for–what I’m still praying for–but the idea that Mitchell’s journey will take him away (though momentarily) from this family is breaking my heart. 

Because it is their story to share and not mine, I asked Christopher for permission to add one of his poignant facebook posts to my blog.

(Here’s a link if you’d like to follow Mitchell on his journey–that’s what the facebook page is called: Mitchell’s Journey.)

I love this family.

[The next section–in italics–was written by Christopher (Mitchell’s father)–it’s what I asked permission to share.]

UPDATE:
As I sit at the end of my son’s bed as he lies curled up and in a deep, deep sleep that we can’t seem to wake him from. He seems to wake enough to take his medicine or go to the bathroom but then he drifts off to a place far away. 

Last night he woke but he couldn’t sit up for very long. His blood pressure is so low that any prolonged sitting causes him to become faint and nauseous. Mitchell’s motor skills are significantly decreased. We were glad to have him eat last night but he was lethargic and could hardly maneuver his fork. Still he tried to maintain his independence and wanted to feed himself as much as possible. We helped a little, but he managed to feed himself on his own for most of the meal.

For all intents and purposes my son is gone. He is here. He is breathing, barely. But in many ways he is gone. I don’t know if we’ll have another meal or conversation or smile … and that breaks my heart. At the moment it feels like the weight of grief is being held in suspension by the hope of one more … of anything.

Each time I read an update–and I admit it’s impossble to read them without weeping–music fills my soul.  It’s the same music that persistently and fervently somehow widens and brightens my view of life–and its accompanying sorrow.

WIthout the music my view becomes narrow, and silent, sometimes bleak and even overwhelmed.

This is one of the songs.